26.2 miles closer to a cure, 26.2 miles closer to giving ALS patients a new beginning.

March 1, 2018March 1, 2018

Mile Motivation | Steve Gleason

Steve Gleason – Athlete, Husband, Father, Hero, and ALS Patient. I’ve never actually met Steve, but I feel like I have because I so am emotionally invested in his incredible story.

Steve released a documentary in 2016 called Gleasonwith the purpose of creating a video diary for his unborn son after he was diagnosed with ALS. I’ll be honest, I cried through the entire film. (I actually had to pause it a few times because I was working myself up so much that I couldn’t breathe.) But it wasn’t all sad and depressing; almost half of my tears were happy ones. On one hand it was a horrific portrayal of the progression of ALS, a raw and emotional closeup of the pressure this disease puts on family members and caretakers as well as the patient, and an authentic expression of how ALS takes a toll on a patients’ mentality. But on the other hand it was an awe-inspiring story of love for family and for life.

Although I highly recommend you head over to Amazon or iTunes to watch the full film, here’s a trailer to give you a glimpse of the strong and resilient, Steve Gleason.

It’s okay, “get the dust out of your eye” and admit that you teared up during that 2:30 clip. And that’s just a small piece of the full story. Did I get you hooked yet? If you can’t watch the full film, I’ll do my best to tell his story here on the blog.

Here we go…

Steve was a super active and healthy guy before his diagnosis. He was an NFL star on the New Orleans Saints (#37) and he was considered a hero to the city during a time of tragedy. During the first game back in the Superdome after Hurricane Katrina wreaked havoc on the the city of New Orleans, Steve blocked a punt from the opposing team during the first play of the game. This was more than just a small victory on the field, this gave hope to the people of New Orleans and signified a “rebirth” for the city.

After learning about his football career, we meet his beautiful wife Michel. I was just so in love with their love. They both had such incredible spirits and together it was just a beautiful relationship that can only be described as #goals 🙂 They laughed, they joked around, and they brought out the best in each other which is honestly the only thing you can ask for in a partner. Throughout the film you really get to be a part of their relationship, the good times and the bad times, you experience them all.

The bad times started in 2011 when Steve started having some strange medical issues. He was experiencing weakness and muscle twitches in his shoulders, upper arms, chest, back, and upper legs. The doctors were saying that it could be long-term side effects from years of football trauma or it could be ALS. Unfortunately it was the latter, and the film shows Steve and Michel researching the disease and all of the terrible news that comes with it. The scariest part was the progression:

“The brain slowly loses the ability to communicate with the muscles leaving the patient unable to walk, talk, and eventually breathe. No cognitive ability is affected, the patient can still feel everything but can no longer move.”

Sidenote: I’ll admit that when I was younger and watching my grandmother go through the same thing, it didn’t really register in my mind. She always tried to play it off like she was fine because she didn’t want to scare me, and to some extent, I believed her. But as the disease continued on its disastrous path, I knew she couldn’t fake it anymore. It was killing her. To see other people’s experiences with the disease now, it makes me realize just how shielded I was when I was younger. I completely lost it at this part in the film because it all weighed down on me in that moment and I just couldn’t stand to think of my grandmother going through that, or anyone else for that matter.

And I think that moment of realization is what Steve and his family started feeling a few months into living with the disease. Michel said it almost didn’t seem real, like she knew all of these things were supposed to happen but she didn’t fully believe it until she saw them happening to him. About 4 months after diagnosis, Steve participated in a triathlon and the second he took off running, Michel lost her composure. It was happening right before her eyes. He seemed off balance, his gait was weird and he just wasn’t the professional athlete he once was.

I think that’s when Steve started feeling the disease creep in, too. But instead of giving in and have a negative outlook, he had just the opposite. “It’s not going to crush my life even if it might crush my body.” The disease wasn’t going to stop anytime soon so Steve and his crew decided to live it up and take a two month trip to Alaska. He was taking advantage of everything this life had to offer and was living in the moment – something that is so difficult to accomplish.

And Steve had another small little thing to live for…his son. Even though he was diagnosed with a terminal illness, Steve and Michel didn’t see that as a reason to not bring a baby into this world. They wanted to bring some light to this dark time of their lives.

Which brings us to the purpose of the documentary – creating a video diary for their son. Steve started to think of everything that his child would want to hear him say – how he met Michel, crazy college/NFL stories, and of course typical dad advice for challenges growing up, dating life, and just how to deal with difficult situations. He wanted to start recording when he was still physically able to move and speak normally so that later on in life when he’s not there, his son would be able to have these “entries” as a reminder of who his father was without the disease. (Ugh, it’s just so touching; I have goosebumps and I’m tearing up even as I’m writing this now.)

About 7 months after his diagnosis, Steve wanted to “get all of his relationships in order.” He worked things out with some of his family members, but I think the most important relationship he wanted to make peace with was the one he had with his father. They didn’t have the best connection growing up and went through some rough patches. Steve’s father recently became a very religious man and wanted to introduce some faith healing practices to his son.

Watching this experience was tough. Everyone went in with an open mind that something good would come from this faith healer. In the middle of the service, everyone there seeking relief would chant, “This is the end of my pain as I know it. I feel fine.” Steve was feeling something and wanted to try and run again — he took about 2-3 steps and then fell on his face in front of everyone. Michel was furious and kept saying, “This is bullshit.”

That’s the other thing that I really enjoyed about this film – it was real, it was authentic, and it was in the moment. When bad things happen in our life we often start to question the higher powers of faith. You know, if there is a “God” then why is he allowing this horrible thing to happen to me and why is he not listening to my pleas for help? I believe that even people with the strongest faith would waver in the face of battling an illness like ALS. And I think that’s just what Michel & Steve were feeling in the moment; hopeless that nothing/no one could take away this dark cloud from their lives.

Once again, Steve turned this dismal situation into something positive by starting his foundation called Team Gleason. He started this initiative with three goals in mind:

To provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services.

To provide and document extraordinary life adventures for individuals with muscular diseases or injuries so they can live each day to the fullest.

To raise public awareness and create global conversation about ALS to ultimately find solutions and an end to the disease.

Team Gleason also adopted the mantra, “No White Flags” when Steve famously said this phrase after his diagnosis. He wasn’t giving in to the disease any time soon; he was choosing to fight back.

A few months later, Michel went into labor! Steve was there with her the whole time and even held his son right after he was born. They named him Rivers and had an extremely, beautiful meaning behind it.

As you could have probably guessed, raising a newborn and taking care of someone who has lost the ability to take care of themselves can be a lot to handle. Michel was stressed, her whole family could see it and so could Steve. She was thin, tired, and was overwhelmed with how much was on her plate. Later on in the film, you can really see the impact all this stress had on Michel and Steve’s relationship. Anger and frustration often turn into distance and it was taking a toll on everyone. That’s the thing about this disease, most people don’t realize how difficult it is for the family and friends that are taking care of the patient. It’s just as grueling for them and I think the film really portrayed the ups and downs of battling with this disease with all parties involved.

There are also ups and downs with patient mentality. One day you can feel strong and in control of your own body, while the next can leave you completely crippled and devastated. It’s a roller coaster of emotions for sure, and a very frustrating situation to deal with. Steve has a moment in one of his video diaries where he just completely breaks down. He was unable to speak at that point in his illness and expressed through his voice equipment that he had no hope, and just wanted to scream. With this disease, you become a prisoner in your own body so I can only imagine how badly he wanted to scream and get all of his anger out.

Because this disease slowly takes strips away your abilities, ALS patients have to rely on expensive equipment to replicate those lost motor skills. I think this film did an excellent job of showing the necessity of equipment in day-to-day life. About 1 year after diagnosis, Steve started to lose his ability to speak and needed to use voice technology equipment with eye-tracking capabilities. He was able to record his voice at the beginning of the disease so the “robot voice” would resemble his own.

A few years ago there was this huge issue that stemmed from Medicare not covering the equipment or treatments ALS patients needed on a daily basis. Steve saw firsthand how expensive this machinery can be and wanted to do something that would allow access to every patient that was in need. He eventually went on to create “The Steve Gleason Act” which President Obama signed into order assuring the availability of life sustaining communication devices.

The end of the film is a tear-jerking montage of clips from Steve’s video diaries, him goofing off with Michel and Blair (Steve’s caretaker), and Rivers running around or playing with the power wheelchair. He signs off by saying, “Parents pass on the best of themselves to their kids.” which is exactly what he wanted to accomplish with the videos.

Today, Steve is still living it up and loving every second he gets to spend with his family. He just celebrated his 41st birthday in February and recently accepted the ALS Hot Pepper Challenge viral phenomenon before challenging a member of the Red Hot Chili Peppers to do the same. He is still active and involved with Team Gleason and regularly stays connected on social media, especially Twitter where he can tweet using his eyes.

Honestly, I’m finding it really difficult to put into words how much this story impacted me. It truly left me speechless. I laughed, I cried, I smiled from ear to ear, and at the end of the film I felt even more motivated to make a difference in the lives of ALS patients.

It was just such a powerful testament to the daily struggles of living with this disease – the physical, emotional, and mental battles patients and their caretakers go through day in and day out. It’s so eye-opening and truly shocking if you’ve never experienced the disease firsthand.

But the most empowering takeaway from Steve’s story was his outlook on life and love. He often said, “I believe my future is bigger than my past.” Pretty crazy coming from someone who was just diagnosed with a terminal illness, but not out of character for Steve. If you watch the documentary, you’ll see that he never lost his spirit throughout this entire journey. He always maintained his sense of humor and joy for life even during times of pain and despair. Steve has an incredibly positive outlook on life & wants each day to have a purpose worth living; a mindset that I think everyone should adopt.

And that’s why I’m doing all that I can to raise money and awareness for Team Challenge ALS – to fund research to find a cure and to help patients enjoy each day while looking forward to what’s ahead. Steve Gleason has made such an impression on my life and has opened my eyes to a new way of living. Plus, I’m definitely adding #NoWhiteFlags to my list of Boston Marathon mantras 🙂